Pulmonary Hypertension Knowledge Sharing Platform @PH_KSP
A patient-led initiative to share knowledge about pulmonary hypertension across the community Joined February 2023-
Tweets27
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Followers21
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Following57
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Likes3
Coming up soon! The 7th edition of the World Symposium on Pulmonary Hypertension is being held on June 29-30/July 1, 2024, in Barcelona, Spain. Task force on patient perspectives will be the first to report back on its findings, on opening day! wsph2024.com
Warmest wishes for the New Year!
Coming up soon!
Delighted to present this exclusive interview featuring Prof. Sean Gaine, Director of the Irish National #PulmonaryHypertension Unit, originally published by the Turkish Pulmonary Hypertension Association shorturl.at/lsyMZ
Pregnancy in #pulmonaryhypertension is a very sensitive and multifaceted topic. Navigating this delicate journey requires a comprehensive understanding of each individual's unique circumstances and values. Join us on September 5 to learn more! ph-ksp.com/announcing-our…
The #PulmonaryHypertension Knowledge Sharing Platform launched in May 2023. Metrics at 3 mths: 📚 376 entries 👁️4,400 website views 🌎1,000+ visitors, from 56 countries & 6 continents youtube.com/watch?v=uI_12c…
The slides and recording of the Alliance for Pulmonary Hypertension's webinar yesterday evening on Patient-Reported Outcome Measures and their role in #PulmonaryHypertension care are now available on our website at this link: ph-ksp.com/slides-and-rec…
Proud that the Alliance for #PulmonaryHypertension has been awarded a 2023 #RAREis Global Advocate Grant by .@HorizonNews Therapeutics’ #RAREis program! We look forward to continuing to make a meaningful difference to the pulmonary hypertension community businesswire.com/news/home/2023…
🌐📚 Discover the newest contributions on the Pulmonary Hypertension Knowledge Sharing Platform by going to its "News" section at this link ph-ksp.com/blog/
It's this Thursday, July 27 at 18:00 CEST! Be sure not to miss our webinar on Patient-Reported Outcome Measures (PROMs) in pulmonary hypertension care and research ph-ksp.com/our-webinars/
Explore the latest entries on the Pulmonary Hypertension Knowledge Sharing Platform by going to the News section at this link: ph-ksp.com/blog/ #pulmonaryhypertension #knowledgesharing #knowledgeexchange #patientempowerment #patienteducation #allianceforph
Have you had a chance to explore the #PulmonaryHypertension #KnowledgeSharing Platform yet? The PH-KSP is a repository of resources, a news portal and a comprehensive calendar about upcoming scientific events conferences. Read more at ph-ksp.com
Last Week’s Key PH Moments You Don’t Want to Miss! May 29- June 4, 2023 #pulmonaryhypertension ph-ksp.com/last-weeks-key…
Have you had a chance to check out the PH-KSP, a new initiative to share information about #pulmonaryhypertension across the community? Here is a selection of the new posts from last week. ph-ksp.com/a-selection-of…
Last week, the Pulmonary Hypertension Knowledge Sharing Platform published a number of entries on different PH-related issues, here is a selection. Visit the ph-ksp.com website to discover our other articles and resources. #pulmonaryhypertension #allianceforph
May 20 is International #ClinicalTrialsDay, a useful opportunity for the #pulmonaryhypertension community to better understand how they work and reflect on potential benefits of taking part. Read more on the ph-ksp.com at this link ph-ksp.com/may-20-is-inte…
Christophe Guignabert @GuignabertC
107 Followers 69 Following
Janie 😏 @Janie1839
6 Followers 489 Following Seеking likе-mindеd individuаls fоr thrilling and рlеаsurаble enсоuntеrs
Adv.Cardiology 2024 @2023AdvHeart
80 Followers 1K Following 3rd Global Conclave on Advanced Cardiology and Cardiovascular Innovations (Adv. Cardiology 2024) June 27-28, 2024 Amsterdam, Netherlands.
Joe Newman @Dr_Joe_Newman
743 Followers 231 Following Respiratory SpR, BHF Clinical Research Fellow & PhD student @hlri_cambridge @Cambridge_Uni @RoyalPapworth Digital & decentralised trials.Patient engagement.🫁📱
Philip McCabe @stavemaker1
14 Followers 14 Following
alena adarbehova @AAdarbehova
4 Followers 21 Following
Rita Maloy @RitaMaloy111852
26 Followers 189 Following
PHA EUROPE @EuropePHA
2K Followers 2K Following European federation for PULMONARY HYPERTENSION. Our mission is to raise awareness of PH & advocate for better access to treatments & transplant #Call4Transplant
Jimmy Ford @HJFordMD
232 Followers 254 Following Husband, dad, and Pulm/Critical Care doc in Chapel Hill, NC. Director, PH Program. I'm into pulmonary vascular disease. Obligatory: “opinions are my own”
ERN-LUNG @ErnLung
1K Followers 2K Following
Maggy @maily6738
15 Followers 129 Following Présidente @HTaPFrance, Conseillère Nationale @AllianceMR
Giac.notarbartolo @giac_notarb
12 Followers 35 Following
phaware® @phaware
9K Followers 10K Following Pulmonary hypertension is a rare disease affecting the arteries of the lungs that can lead to right heart failure https://t.co/7eTrbaohXX Burbank, CA
Asociacion HAPCHI @HAPCHI_CHILE
580 Followers 278 Following Asociación Chilena de Hipertensión Pulmonar, creada para unir a los pacientes de Chile con esta patología.
Ümit Yaşar Sinan @umityasarsinan1
2K Followers 3K Following Assoc. Prof. of Cardiology, Former ESC ACCA YNA of Turkey, Executive Committee Member of TSC Young Cardiologists, Lipid, PVD and GUCH Working Group
Çok Ünlü Kişi @Cukowski
520 Followers 2K Following “Tam bağımsızlık denildiği zaman, elbette siyasi, mali, ekonomik, adli, askeri, kültürel vs. her hususta tam bağımsızlık ve tam serbestlik demektir. “ Atatürk.
PAHSSc @PAHSScDernegi
537 Followers 449 Following #PulmonerHipertansiyon ve #Skleroderma Hasta Derneği #eisenmenger, #ipf, #KTEPH, #PAH, Akciğer Nakli ve Organ Bağışında Varsayılmış Onam Sistemini savunur.
admedicum @admedicum
241 Followers 951 Following We are specialists in patient engagement and patient access in research, development and access to treatment, medical devices and services.
Asociacion HAPCHI @HAPCHI_CHILE
580 Followers 278 Following Asociación Chilena de Hipertensión Pulmonar, creada para unir a los pacientes de Chile con esta patología.
Diane Ramirez @drpher
475 Followers 822 Following
myPHteam @myPHteam
324 Followers 77 Following myPHteam is the social network for those living with #PulmonaryHypertension now with more than 31,000 members! Get support & resources in a private space. 💙
Fundación Colombiana.. @FCHP_colombia
687 Followers 803 Following Organización sin ánimo de lucro que lucha contra la Hipertensión Pulmonar, Esclerodermia, Lupus y otras Enfermedades Raras que generan Hipertensión Pulmonar.
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
PHA Slovakia @PHASlovakia
287 Followers 42 Following Združenie pacientov s pľúcnou hypertenziou, o.z. združuje všetkých, ktorým je blízka problematika pľúcnej hypertenzie
HipertensiónPulmonar @ANdHP
2K Followers 951 Following La Asociación Nacional de Hipertension Pulmonar (ANHP) es una entidad benéfica, sin ánimo de lucro, fundada en 2004 y declarada de Utilidad Pública en 2008.
AIPI Associaz. Iperte.. @AipiOdv
326 Followers 534 Following http://t.co/Sh9x9KvlZf. Associazione di supporto ai pazienti con #ipertensionepolmonare #ip- Support group for patients with #pulmonaryhypertension #IAP.
CHEST @accpchest
45K Followers 5K Following Advancing best patient outcomes in chest medicine. Official account of the American College of Chest Physicians® #CHEST2024 @journal_CHEST
Alliance maladies rar.. @AllianceMR
4K Followers 2K Following Collectif de 240 associations de malades portant la voix de 3 millions de personnes concernées par 7 000 #maladiesrares en France. Besoin d'aide ? 0800 40 40 43
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Hipertensión Pulmona.. @HPE_ORG
770 Followers 885 Following Iniciativa basada en la colaboración paciente-profesional sanitario y el empoderamiento de los pacientes afectados por #HipertensiónPulmonar.
Fundación contra la .. @fundacionhp
3K Followers 1K Following La Fundación Contra la Hipertensión Pulmonar (FCHP) pretende mejorar la calidad de vida de los afectados por esta enfermedad.
A Todo Pulmón HP @AtodopulmonG
577 Followers 893 Following Fundación Grupo de Apoyo A Todo Pulmón fue constituido por personas con HP. Para concientizar sobre esta rara enfermedad en Venezuela. Catalogada así OMS.💜
Denis Costello @rarecare
3K Followers 3K Following Director at @cmlnet Empowering leukemia patient leaders (CML). Patient advocate, formerly @eurordis & @RareConnect Own views
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Beyond the Diagnosis @BeyondtheDx
9K Followers 5K Following Beyond the Diagnosis unites art and science to inspire research and innovation of treatments for people living with rare and neglected diseases.
Vinicio de Jesus @Viniciodjperez
2K Followers 930 Following Clinician Scientist with a passion for pulmonary hypertension research and management. Proud boricua and citizen of the world.
Olivier Sitbon @OSitbon
372 Followers 171 Following
Blue Lips Foundation @BlueLipsORG
578 Followers 798 Following Blue Lips Foundation was established to fund research for early detection of Pulmonary Hypertension.
Asociación Tejido Az.. @TejidoAzul
273 Followers 246 Following Organización sin ánimo de lucro de apoyo a pacientes colombianos de hipertensión pulmonar y sus cuidadores.
Fundación Ayúdanos .. @AyudaaRespirar
685 Followers 745 Following Red de apoyo, salud, conciencia, educación, empoderamiento. 💜Hipertensión Pulmonar y conexas. 🩻
Sheila Krishnan @SheilaKrishnan2
192 Followers 239 Following Physician, Pulmonary Hypertension, Lung Transplant at Spectrum Health
Roham Zamanian @docroham
1K Followers 654 Following Professor of Medicine ; Director Adult Pulmonary Hypertension Program ; Associate Director Vera Moulton Wall Center; clinical trialist ; photographer.
International CTEPH A.. @ICA_CTEPH
282 Followers 37 Following The International CTEPH Association is an organisation of health care providers committed to advancing the diagnosis and treatment of CTEPH
Gustavo Heresi, MD, M.. @heresi_gustavo
426 Followers 209 Following Section Head, Pulmonary Vascular Disease @ClevelandClinic All tweets my own. RT does not mean endorsement.
Stanford Wall Center @PHatStanford
403 Followers 100 Following The Wall Center seeks to enhance the lives of patients with pulmonary vascular disease through research, teaching, patient care and community.
Elena Goncharova @GoncharovaLab
595 Followers 220 Following studying mechanisms of pulmonary hypertension. Views are my own.
Clinical Trials - Pul.. @PHClinicalTrial
108 Followers 45 Following PH is a rare disease. This account was created in order to centralize clinical trials ongoing in this great field. SO JOIN US ! #PH #PAH #CTEPH
Marcin Kurzyna @marcin_kurzyna
336 Followers 279 Following Professor of medicine Head of Dept.of Pulmonary Circulation, Thromboembolic Diseases and Cardiology in Centre of Postgraduate Med. Education EHC Otwock,Poland
Child Heart Foundatio.. @ChildHeartFndn
385 Followers 102 Following 🫀 Free Heart Screening | Life-saving Treatments 👶🏼 Mission to save lives of underprivileged children 📌 Financial Assistance for Heart surgeries
FundacionHPRD @FundacionHPRD
461 Followers 217 Following Fundación Hipertensión Pulmonar República Dominicana
Chloe Temtchine @ChloeTemtchine
31K Followers 13K Following Musician, Speaker-Recipient of double-lung transplant 🙏🏻- https://t.co/8VaX2hDE1v
PH biedrība @phlatvia
277 Followers 328 Following Our aim is to improve quality of life for PH patients and to educate society and raise awareness about the presence of pulmonary hypertension
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Team PHenomenal Hope @teamphhope
5K Followers 807 Following Racing to make a difference in the lives of those with pulmonary hypertension. #LetMeBeYourLungs
Hipertensión Pulmona.. @LatinosConHP
2K Followers 2K Following • Sociedad Latina de #HipertensiónPulmonar • Trabajando para las asociaciones de pacientes de #Latinoamérica #slhp #hp #hap #hptec #RespiraLATAMConHP
Pulmonary Hypertensio.. @PulmonaryHIndia
594 Followers 795 Following #rightheartmatters An empathetic & resourceful community of 🇮🇳PHighters, PHamily, & PHriends. Join our Patient Support Group👇🏻
Pulmonary Hypertensio.. @JournalClubPH
1K Followers 577 Following A new dyssynchronous Twitter Journal Club to discuss #PulmonaryHypertension articles. Account run by @AlbertaPHdoc
PHA UK @PHA_UK
2K Followers 463 Following We are the Pulmonary Hypertension Association UK (PHA UK) - dedicated to supporting people affected by pulmonary hypertension.
Pulmonary Hypertensio.. @PennMedPH
679 Followers 148 Following Follow for updates from the Penn Pulmonary Hypertension Team, a devoted group committed to bettering the lives of our patients.
phaware® @phaware
9K Followers 10K Following Pulmonary hypertension is a rare disease affecting the arteries of the lungs that can lead to right heart failure https://t.co/7eTrbaohXX Burbank, CA
The Pulmonary Vascula.. @PVRI
2K Followers 801 Following For a world without pulmonary vascular disease
wendy gin-sing @wginsing
742 Followers 687 Following Pulmonary Hypertension Nurse Consultant working in Imperial College Healthcare NHS Trust at the Hammersmith Hospital.
PHA EUROPE @EuropePHA
2K Followers 2K Following European federation for PULMONARY HYPERTENSION. Our mission is to raise awareness of PH & advocate for better access to treatments & transplant #Call4Transplant
Ελληνική Κο.. @Hellenic_PH
183 Followers 218 Following
HTaPFrance @HTaPFrance
853 Followers 781 Following Association des patients hypertension pulmonaire, notamment l'HTAP ou l'HTPTEC, greffés ou pas, et leurs proches. Que l'expérience des uns bénéficie aux autres!
Be sure to read this recently published review article 📖 Balloon Pulmonary #Angioplasty for Chronic Thromboembolic Pulmonary #Hypertension: A Systematic Review and Meta-analysis link.springer.com/article/10.100…
This month's Pulmonary Hypertension Community Call is now available to view. Watch now: pvrinstitute.org/en/professiona… #PulmonaryHypertension #PVD #PAH
Check out our upcoming Amsterdam Lung Congress 2023 with a special focus on Pulmonary Hypertension! Dates: March 16 & 17, 2023 Registration: amsterdamlongcongres.nl/long/reg
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